Following on from my last post I just thought I’d do an update on how we got on and what happened. It was long and tiring as well as exciting and interesting and, as expected, our little lady was simply amazing.

But before I start I just wanted to say a big thank you to everyone who took the time to either comment on my last post or to email me to wish Lucia luck and to share your experiences. It means so so much to us to have support and encouragement from you all as we continue to find our way through this condition.

Here we go

We arrived at the hospital about 9am and met up with Lucia’s therapist, Lynne, and headed down to the Radiology Department. We had told Lucia she was going to get special photos taken of the inside of her legs – a bit like an X-ray – but hadn’t mentioned the injections at this point.

The radiologists were brilliant with her. So friendly and kind and chatted to her as well as to us which we appreciated. They explained the procedure to us, including the injections between the toes – and as you can imagine, Lucia’s little smile turned to fear. But they were very quick to reassure her that they would be putting lots of magic numbing cream between her toes as well as some freeze spray so she wouldn’t feel anything.

So on went the magic cream and we went back out to sit in the waiting room for half an hour for it to take effect. She sat up on Daryn’s knee with a little table and we gave her the brand new colouring book and pens we had got especially for the day and she happily coloured in without mentioning the injections at all.

The toughest part

Then we were called into the room where she was to lie down on the bed for the injections. They had a tv all set up and a choice of DVDs – Peppa Pig made the cut so she lay down to watch a few episodes while we got the worst bit of the day over. And she was amazing. She lay like a little darling while I held her hand and chatted to her to try and stop her looking at the needles. She knew they were coming but she lay still and let the radiologists do what they had to do.

This part was tough. One had to hold her toes apart while the other injected the dye. She whimpered and cried a little when it went in on each foot while I held her tight and Daryn tried to distract her. And then it was over.

Amazing inner strength

Lucia has an amazing inner strength. The courage and resilience she showed on this day had our hearts fit to burst. She has such a strong, fighting spirit that she draws on at times like this – and everyday living with Lymphoedema – all without even knowing it. We say so often she takes everything in her stride – but she can only do this because of that strength and the positive attitude she carries within her.

(Max has this too. He has been through 5 broken bones in 2 years and the way he got through each injury was simply incredible too. The bravery, the patience and the resilience he showed and continues to show each day makes us so very proud.)

Walking, running, dancing, scanning and repeat

Once the injections were over we felt like we were flying! We could see two ‘magic sparkles’ on the screen – one on each foot – and we were then sent off to take Lucia for a half an hour wander around the hospital. This was to try and get the dye to travel through her lymphatics before the next scan.

So we walked up and down 110 stairs, danced, skipped and ran up and down quiet corridors, got a bit lost, grabbed a cup of tea and a pain au chocolate before heading back to get scanned.

Lucia was then made comfy on the bed with peppa pig in full view, while the scanner was lowered down until it was merely centimetres away from her body. She had to lie still for about 20 minutes as the bed very slowly inched its way out from beneath the scanner which was taking constant photos of her.

She was as good as gold – had a few wriggles! – but otherwise lay cuddling her little kitty and watching peppa pig. While she was being scanned I almost felt like I was holding my breath waiting to see or hear what was showing up on screen. Turned out, not much was happening. The dye didn’t seem to have moved anywhere on either leg so we were once again sent off to try and get this moving.

Another half an hour of walking, running, dancing, skipping and stair climbing until Lucia’s little legs couldn’t take anymore and she was back up under the scanner. This time the radiologist said they could see the dye had moved up through the lymphatics of her left leg but the right hadn’t budged.

So this time we were sent away for an hour – and you can imagine how tired Lucia was by the end of it. She did about 12,000 steps overall and boy were her legs feeling it.

Our hospital travels!

Back under the scanner for some final photos but again, things on the right still didn’t seem to have moved. However, this was just a ‘first glance’ at the scans by the radiologist. We know that a lot of filtering and interpretation has to be done to read the scans so in a few weeks we hope to have a better idea of what is going on. Obviously we know her right side – which is most affected – isn’t working well but we really hope that these results will maybe give us a bit more info on why.

And then it was over…

We left the hospital after 2pm and Lucia requested a stop off at a coffee shop for a special hot chocolate and a croissant – which we were more than happy to do! We then headed home to get her some rest and a lovely bubble bath to ensure the injection sites on her toes were nice and clean. I also put some savlon antiseptic cream on too as a precaution, but thankfully there has been no redness or issues.

She was asleep by 7pm and slept a full 12 hours that night. (I wasn’t too far behind her since I had very little sleep the two nights beforehand.) Her school and teacher were fantastic as always and suggested I lift her early from school for the rest of the week to let her fully recover and get over her big day.

So now we wait and hope that in a few weeks we might have a little bit more of an insight into this condition and exactly how it affects Lucia – so watch this space.

So tomorrow is a very exciting/nerve-wrecking day for us. Lucia is getting a Lymphoscintigram carried out. This means we will finally be able to begin to understand what exactly is going on inside her little body. It’s a procedure we had read about when she was just a baby and had always been keen to get done, however, we had been told that she wouldn’t be able to have it until she was around seven or eight years of age.

But here we are – she is only five – and we are booked in to get it done tomorrow in our local hospital. When the letter arrived we were really shocked and surprised as it just hasn’t been on our radar at all. I actually re-read it a few times to make sure I was reading it right as we always thought we would have to travel to London to get it done.

We have had quite a bit of activity around the genetics side of things over the last few months (a whole other post of its own!) and this procedure is being carried out on the back of the results that we have received lately. Lucia’s Consultant Geneticist ordered the test, as what we find out through the Lymphoscintigram will be another piece added to the puzzle that we have been trying to figure out for the last five years.

So what is a Lymphoscintigram?

For those who may not know, this is an examination in which pictures of the lymphatic drainage of the limbs will be taken by a Gamma Camera after a small radioactive injection. The radioactive bit sounds a bit scary doesn’t it! Basically, Lucia will be injected between her toes with a radioactive tracer which will show up her lymphatic vessels so we can see how the drainage of her lymphatic system is working – or in her case, not working. It will take a few hours all in all and will involve a bit of sitting about and a bit of walking about.

Excitement v Fear

We are really excited to be getting it done. To finally be able to take a look inside our girl’s lymphatic system and hopefully see what we are dealing with and how we might use this information to help her. I’ve said before in previous posts that knowledge is power – so I hope this will give us more power.

When it sank in that this was happening I also started to get a little bit scared as well – which I think is completely natural as a mummy. But I am working hard at managing the fear and thinking of the positives that the information will hopefully bring. It was Max’s 9th birthday last week as well so with a weekend of birthday parties to organise I haven’t really had time to think about it all – until now.

I think my main fears are about the actual procedure itself. First of all they have to inject the dye in between the big toe and second toe of each of her little feet. That alone has me freaking out a bit. How sore would it be? Would she sit still to get it done? What happens if they inject and she pulls her foot away and the needle cuts her toes? What is the risk of infection? We are always told she cannot have any needles, injections etc put into her feet or legs because of the risk of infection yet here we are doing just that. But I have to be confident that the doctor doing the test will be vigilant and everything will be carried out to a tee.

How will she feel when the dye goes in? Will it feel strange? Will she feel nothing at all? And then after the test – how will it affect her? How much will it take out of her physically and emotionally? In a recent post (here) I have written about how her body reacts and ‘crashes’ when something big happens, so that is also playing on my mind a bit.

I have spoken to Lucia’s therapist about all of this of course and she will also attend the appointment with us which is very reassuring – for us and for Lucia. I know there will be a freeze spray for her toes to hopefully ensure she feels very little pain and we will use lots of distraction techniques so she doesn’t have to see any needles. I have spoken to her teacher to let her know she will be missing school and, if need be, will also have a recovery day. She actually suggested sending her home early for the rest of the week if she needs it which I was really appreciative of.

A new chapter

But aside from my overactive mind, my overarching feeling is of excitement as this is a huge step in our journey. This feels like the beginning of a completely new chapter in our lives, when we will finally start to understand what is actually going on with Lucia’s lymphatics. When we discover what has or hasn’t formed properly. What is there or what isn’t there. Is she missing vessels? Or nodes? Or both? And where exactly?

The results will tell us so much and hopefully open up so many more doors for us. Whether it be tailoring her daily therapy to better suit her or looking into the possibility of micro-surgery in the future – who knows? But we will finally have some more answers that we have wanted and needed for years. We know there are other tests and procedures that can also be carried out that might even look more in-depth, but this is a fantastic starting point.

So wish us luck – I barely slept last night and when I did my dreams were very strange so I’m pretty sure tonight will be the same. I have packed a bag of snacks and drinks, toys and books and plenty of cuddles from mummy and daddy! But, knowing Lucia, who always manages to take everything in her stride, she will no doubt handle it all superbly. And we will be there to hold her hand every step of the way.

I had the majority of another post written but after this morning I am bumping it for this one instead. It was one of those mornings where my heart was so full of pride, some may have escaped from my eyes!

It was Lucia’s last ballet class before Christmas and they had all been practising their moves over the last few weeks to show the mummys and daddys, brothers and sisters, grandparents and anyone else who wanted to come along. And I don’t think I was quite prepared for what we were going to see.

Our pre-ballet routine is the same every Saturday – Lucia gets her toe caps put onto her right foot as soon as she gets up along with her converse to try and reduce the swelling in her little foot to make her ballet shoe more comfortable and a better fit. After breakfast she also has some elevation before we get her compression on under her ballet gear. Then off we go!

When we arrived today, Lucia, along with the other girls in her class, disappeared into a little room off the hall where they practice and got their nails painted, a little bit of sparkle on their cheeks and a dash of red on their lips.

Then out they came with Lucia leading her little group, skipping around the hall with high knees and pointed toes looking like the most beautiful little swan I had ever seen in a beautiful white leotard and tutu covered in sequins. Before she even came out I could feel the tears pricking the backs of my eyes but when I saw her I had to really focus on holding myself together.

Watching her plie, pointing her toes, jumping and skipping – all while she beamed with happiness and confidence – just took my breath away. She loves to dance, simply adores it whether in class or at home, it is just part of her. And when I think back to when she was a little baby and everything felt so uncertain – whether she would be able to walk never mind dance – I feel like I have to pinch myself on days like today.

I watch her with complete awe. I watch her with the biggest smile on my face. I watch her and embrace the joy and confidence that she has and often feel completely overwhelmed by her. By my girl. My girl who we tell everyday that she can do anything she wants to do. That she can be anyone she wants to be. And then we watch her as she goes and just does it. And honestly, I can barely describe how that makes me feel as her mummy.

I say it a lot but it is like my heart could explode. That lump in my throat, the tears in my eyes, finding it hard even to breathe because my girl is out there doing what she loves most in the world. Being a five year old who loves to dance.

And as her wonderful big brother Max said afterwards – ‘Lucia was the most beautiful girl and the best’ – I’d have to agree.

I started writing this post at the beginning of October…and am finally getting round to finishing it now. I can’t believe it’s been so long since I last posted! But life just goes like that sometimes doesn’t it? When you barely have time to reply to texts never mind manage a blog post. But I always have a couple in my head waiting to get written when I find a rare, spare bit of time!

I’ll try and keep this current (and not too long!) but it will back track a little to update how things have been these last few months since the kids started back to school. And considering they started at the end of August and we put our Christmas tree up last weekend (too early?!) I have quite a bit of ground to cover!

So, this one is about school, sickness and swelling as the title says. Both Max and Lucia settled into their new classes really well at the beginning of term, their work kicked in pretty quickly and the intensity of routine tired everybody out after the long summer holidays.

And, as every parent knows, the return of school also means the return of school germs. Schools are quite simply breeding grounds for all of the nasty bacteria that love to create havoc in family life. In the first eight weeks of school, Lucia was off sick on three separate occasions. Yes – three times! And in the last week she has been dosed with the cold, high temperatures and tonsillitis meaning she hasn’t been at school all this week either.

The ‘episode’

The first bit of time off came about two weeks into the new school term and was a funny one (maybe one I can’t even blame on school germs?? But I am going to anyway). All I can describe it as, is like an ‘episode’.

It was a Friday evening, she had ate dinner, we had done her therapy and she was in good form. Literally though, within a minute she started to feel unwell. She turned white as a sheet, thought she was going to vomit so stood over the toilet for a while though I had to support her as she had wobbly legs. She became very lethargic, her body had the shakes and she ended up curled on my knee on the bathroom floor barely able to kep her eyes open, drifting in and out of sleep. She also got very cool and clammy to the touch and it was a pretty horrible experience.

This has happened before. This was the fourth occasion. So we knew she would be fine, though still extremely worrying none the less. Each ‘episode’ as we have called it does seem to come after a big day, a busy time or a stressful time.

The first time was about a year ago after a hospital visit to the genetics department where she had to get quite a bit of blood taken. She had seemed to handle it really well during the actual visit, then at tea time this same sort of thing happened out of the blue. The second time she had high temperature which most probably brought it on. The third time was after she went on stage with her ballet class to do a little dance and afterwards her body jut seemed to ‘crash’. And then this latest episode. We always try and find an explanation for these moments, so this time we thought it was the first two weeks of school catching up on her and getting all too much for her to physically deal with.

Does this sound familiar to anyone? Has this ever happened to anyone with Lymphoedema or who has a child with Lymphoedema and maybe overdone it? I’d be so interested to hear. It takes her days of rest to get over this.

Sick, sick and more sick

A few weeks after this the dreaded tummy bug hit her and it was horrific – but I’ll spare you the details. About 10 days after this she then relapsed with the bug again…

Then last week she was completely loaded with the cold, her temperature starting spiking and this week a visit to the doctor diagnosed tonsillitis.

I know I have written about sickness before (check it out here) but I do wonder if Lucia does pick up more than an average five year old. I remember Max picking up a lot as well (but this much??) so maybe this is normal and I’m worrying for no reason. Or, as mentioned before in a previous post, is it because the immune system is intertwined with the lymphatic system so it just doesn’t work as effectively?

Swelling conundrum

So her swelling. Once again we are finding it definitely increases when she is at school in comparison to when she is off school for an extended period. However, she does have her legs elevated under her desk everyday when in class and this has definitely had a positive impact. On treatment days I just try and spend some extra time working on those areas which seem to gather fluid the most – feet, ankle and lower leg.

When she is ill her swelling usually flares up but, randomly, these last few times her leg and ankle have looked fantastic even though she wasn’t wearing compression for a few days – we just don’t have the heart to squeeze her into them when she is feeling poorly. Her right foot and toes do suffer though so if she can manage wearing toe caps we try and put them on for a few hours at least.

Legs looking fantastic even though she is sick

So why would her leg swelling be so good?? Is it simply because she is off her feet pretty much all day so gravity and pressure isn’t able to cause so much swelling? We do have her elevated constantly when she is sick to try and make up for the lack of compression so maybe this combination is the key. Again – any knowledge or experience welcome. We do be pretty baffled.

Guess work all the way

I think the whole ‘guessing game’ just gets tough sometimes. Trying to find rhyme or reason for why she is more swollen one day than another or why she has been ill so much. Guessing why she is complaining of pain in her ankle or why her legs feel more tired today than yesterday. Always guessing.

But, at the end of the day, we continue to manage with whatever comes our way and Lucia copes with everything in her own amazing way. And because she is so young she doesn’t event realise how remarkable she is. This is just her ‘normal’. So long may that continue being the case.

How is it mid-September already and how are we slap, bang, right back into routine again? School started a few weeks ago and that wheel has already started turning with homework, after school clubs, ballet, football, swimming and everything else that happens on a daily basis. Some days there really just isn’t enough hours.

Following my last post about Lucia getting measured up for new garments after the bandaging, I was messaged a few times on what compression Lucia wears. So I thought a quick post would be helpful.

Lucia has been wearing Juzo Expert garments now for just over a year – and they are brilliant. They do a great job and, most importantly, Lucia is comfortable in them.

Juzo fits

What we love with these garments is that they fit! That may sound simple but those of you with Lymphoedema will know that this is often not simple at all. We have had garments from a different supplier in the past that had to get sent back constantly to be adjusted or re-made completely – even though they receive up to 40 different measurements from Lucia’s toes to her waist so they can make them specifically for her. At one point last year Lucia was in garments that were nine months old because they just couldn’t get it right – and you can imagine how much she had grown in that time period. In the end we just gave up and that’s when we found Juzo.

I’ll say it again – they fit. When you go through the process of getting measured and you wait for a few weeks to get your new garments because you are in desperate need of them, you just want them to fit! And (apart from one occasion) Juzo has come up trumps every time.

As well as fitting, they do an amazing job with her swelling, they are soft, Lucia finds them comfortable, they look great with her little dresses and – most importantly when you are five years old – they come in different colours!

Colours, colours, lots of colours

First and foremost Lucia wears ‘Happy Red’ five days a week as part of her school uniform. When she first set eyes on them her wee face just lit up with joy – ‘I don’t like them mummy, I love them!’ They are a wonderful shade that matches her uniform perfectly and look just like ‘regular’ tights. The only thing I am worried about here is that they are classed as a ‘Trend Colour’ so come March this colour will be no longer available. We hope that they will still have some shade of red that will suit (last year she wore Cosmic Coral so fingers crossed.) Or, Juzo , if you are reading this can you help us out on this?!

Happy Red by Juzo for school

We also love ‘Sugar’ which is an off white shade – great for ballet class and under dresses and skirts. But her most favourite of all the colours is ‘Very Berry’. They have no pink at present in their colours (hi again Juzo! Preferably a pastel type pink!) but the next best thing is purple. She actually shrieked as if it was Christmas when she received the purple shade and wanted to wear them everyday with pride. Such a simple thing that brings so much happiness to a little girl.

Very Berry by Juzo – her absolute faves!

Style

I’m not sure if this is classed as style but Lucia wears full tights but with an open toe on the right and toe caps over the top. (I have a more detailed post on this combo and how it came about here.)They stay up really well, they wash well, dry quickly (overnight if you use the washing machine), are great quality and we know we can depend on them. And most importantly they are doing a great job. The difference in her foot and toes in particular each evening is amazing and her leg gets some wonderful results as well. Some days are better than others depending on what she has been doing or just how her system is working on any given day – but overall these garments work well.

We are so so pleased to have these garments in our lives as we know we can depend on them – and considering compression is one of the most vital components in the daily treatment of Lymphoedema this helps to take a bit of the weight off our shoulders, knowing she is comfortable and happy.

Another bandages post! But we have a lot more to add this time. Lucia is currently bandaged from her toes to the top of her thigh and this is her third experience now of being all wrapped up. She has had them on for almost 48 hours and so far she is once again handling it like a little star, though we can see her a bit more tired than usual and her appetite has pretty much gone.

To pick up from where we left off the last time – we tried the bandaging for 24 hours the first time round to see if she could cope with it and saw a fantastic difference in her swelling. Although the fluid did return pretty quickly, it was brilliant to see the impact this treatment could have on Lucia’s condition. So after chatting with Lynne we put a plan in place that has gone a little something like this:

1. Bandage her to the top of her thigh (use a little bribery with a new toy enable this to happen!)
2. Keep the bandages on for longer – 3 days and nights (use a little bit more bribery with a new toy to enable this to also happen!)
3. Measure her for compression garments as soon as the bandages are taken off at this ‘reduced swelling’ size
4. Order new garments
5. Repeat steps 1 and 2 when the garments arrive to get her leg and foot back down to that ‘reduced’ size so she can wear the new garments and hopefully maintain this ‘reduced’ swelling for longer.

I am happy to say we are currently at step 5!

Let’s go back

On a Friday at the end of July Lucia got her bandages on to her thigh and we were aiming to try and encourage her to keep them on until the Monday when she would then be measured up. We were also heading off on our holidays on the Monday so it was an added incentive. And she did AMAZINGLY. We were so proud of her as this was a long time for a 5 year old to endure. But she did it.

She slept through the first night with it on no problem. The second night she was up a couple of times and the third night we were up for quite a few hours as she just couldn’t sleep. She had a few niggles and itches under the bandages so we did our best to try and distract from them with games, films and stories.

As the weekend went on we could also see her energy levels dropping and fatigue setting in as well as her appetite becoming non-existent. It doesn’t be great at times anyway (fussy eater anyone?) but this was a whole new level. She didn’t even want her favourites – including chocolate.

However, she still did manage a houdini moment and escaped outside with Max before I realised – welly on one foot, bandages on the other!

Then the bandages came off on the Monday and the results were simply brilliant – the extra few days had made even more difference as you will see from the photos below. And her leg and foot felt so soft and so bony – those of you who follow the blog will know we don’t often get to feel those wee bones.

Before bandaging and after bandaging. I know the angles are slightly different but you can still see the difference.

Left photo – first time bandaging for 24 hoursRight photo – second time bandaging for 72 hours

All the measurements were taken and we put her into her regular compression and headed off on our holidays to enjoy some family time together on the North Coast of Northern Ireland – our very favourite place in the world!

Holidays! (A bit breezy!)

However, the first few days of holidays her energy levels and appetite were still pretty low – like her battery was down and she was a dulled down version of herself. This lasted until Thursday when she woke up, asked for two bowls of cereal and was back to her usual bubbly wee self!

Our thinking was that her little body was struggling to process the extra fluid being sent through her system. That her organs were under strain and having to work overtime to deal with these extra pressures and therefore really taking it out of her. If anyone else who wears bandages from time to time can relate or explain please feel free to get in touch.

Step 5

So as I said we are now at step 5. Her new garments arrived on Friday so she got her bandages on again that morning with the aim of making it until Monday (tomorrow). Again her appetite is pretty much gone and she has been having lots of niggles including itches and a sore baby toe and side of foot, but we’ve been working the distraction techniques again. We also hit the toy shop again on Friday for a few more little goodies to take the edge off it all – and some for Max too who fractured his wrist two weeks ago. So we currently have Lucia bandaged up, Max wearing a splint and both being so brave.

Lucia is looking forward to getting the bandages off tomorrow and getting some relief. It will be great to see the results, get her new compression on and see what difference this treatment might make – and to see if it may become a regular addition to her current treatment plan. As I say pretty often, we are always learning with this condition and if there is anything extra we can do to keep on top of it then we are in.

Final note – incredible kiddies

I cannot begin to tell you how proud we are of both of them. Max has had a tough couple of years (five broken bones and a dislocation) but still keeps smiling, stays positive and rarely complains even though he is desperately missing his football. He has had such a bad run of luck and the unfairness of it all breaks our hearts. Hopefully though, he will be back playing in another month (wearing bubble wrap under his kit!)

And for Lucia to have to go through everything that having Lymphoedema entails on a daily basis – plus this new treatment – and coping with it all in her own wonderful way, inspires us everyday as well. Five year old’s should not have to go through all of this, but her resilience and understanding at such a young age really is amazing and helps us when we are feeling a bit low about it all.

So it seems that gremlins managed to get into my blog and those of you who kindly subscribe to it won’t have received notification of my last four posts!

However, my IT guru has been on the case (thanks Andrew!) and has sorted the problem for me – so I have linked all four posts below.

The last month has been a busy one and includes a few changes and new experiences for us that may be of interest to you – including a look at how we all coped with Lucia’s first year at school, new compression details and bandaging trials.

I hope you can find a few minutes to catch up on where we are and as always I love to read any comments of similar experiences or if anyone has any advice or tips please do get in touch. These can be invaluable as everyday truly is a learning day with this condition.

I had planned to write this post over the weekend when we got Lucia’s bandages off, but we had some gorgeous weather and made the most of that instead!

My last post focussed on Lucia getting the bandages on and how she managed (amazingly!) – if you want a wee read click here. This post is about the results and future plans.

So – Lucia managed to keep the bandaging on for a full 24 hours which was brilliant for her first time. She slept all night in them and the only issue she had was not being able to get her ‘snuggly suit’ (fleecy onesie) on in the morning because her ‘pass the parcel’ was too big. (She nicknamed her bandages pass the parcel because it had so many layers like the party game!)

We headed in to see Lynne that morning and she was delighted that Lucia had managed so well. She told her she was so proud of her and had done brilliantly which made Lucia feel very proud of herself. (This woman is so special).

She then cut the bandages off to see if they had reduced her swelling. I should say here that Lynne didn’t put them on as tightly as she could have – this was more just to give Lucia a feel for them and to see how she would react. So bearing this in mind we were still amazed at the results.

Her leg looked and felt so different! The bandaging had visibly moved so much of the fluid from the outside of her leg and her ankle had the most beautiful little shape to it. And as for her foot – I could feel all of the bones on the top of her foot and her little toes were so long.

Normally when we take off Lucia’s compression at night – and particularly after she has worn her toe caps and shoes – we can feel one of the bones on the top of her foot. This time though it felt so strange to be able to feel the solidness of her whole foot if that makes sense? Hard to describe! Lynne said it was because there was more ‘depth’ to the swelling reduction rather than the superficial reduction of compression garments on a day-to-day basis.

And this ‘depth’ of reduction applied to her whole lower leg and foot. You can see in the before and after photos what I mean.

We were definitely impressed by this and excited to see how tighter bandaging put on for a longer period might go. So much so that we have planned it in for August time.

By the evening though we could see the fluid starting to gather again – you can see this in the picture below which shows the results just after bandaging (left photo) and then her limb in the evening of that day (right photo). You can still see the difference in comparison to the original ‘before’ photo but it just goes to show how quickly that fluid starts to return.

It also just reminds us that we still really don’t know what we are dealing with when it comes to Lucia’s lymphatics – where the issue is, what the issue is – is it a node problem? A structural problem? Both? And until she is a little older we won’t be able to find this out as she has to be around eight years old before any type of lymphoscintigraphy test can be carried out. However, there has been significant movement on the genetics front which I will post on soon.

Anyway, we were definitely happy with this first little venture into bandaging, how Lucia coped with it all like a little star, the results that came from it and the plans we have now put in place to try it again in a few weeks’ time. Watch this space.

Just a short post this evening to update on a new treatment we are trying for Lucia – new for her but not new for any other lymphies who may be reading this. We were up bright and early to meet Lucia’s therapist, Lynne, in the hope that Lucia would allow her to do some bandaging of her right leg and foot to see how that would impact on her swelling.

We had put this into the diary a few months ago when her swelling was particularly bad, but until she was off school on her summer holidays there wasn’t an opportunity or time to try it out. We talked through all of this with Lynne and at the time I remembering feeling so anxious about it all. From the outside looking in putting some bandages on may not seem like a lot – but to us it was another huge step in Lucia’s lymphoedema management.

A new step

It’s a much more intensive treatment that should ideally be used for weeks at a time to see any real results – but this first time was to be more of a ‘taster’ for Lucia…to see if she would allow it, to see if she could tolerate it, to see if she was sore, uncomfortable or found it unbearable to wear. Or on the flip side to see if she was comfortable and if she could bear to wear it for even a short period of time.

Just thinking about all of this really made me stress – it’s almost like once you start something with this condition you can’t stop it. Once we started the massage it was everyday, when she started wearing the compression it was everyday, the machine is used on a five times a week basis not to mention all the other daily ins and outs…so if we started bandaging how often would this have to be added into her care routine on top of everything else?

Talking and compromising

We spent the last week talking to Lucia about it, trying to prepare her for it and for the first little while she was adamant that this wasn’t going to happen. She gave us a firm NO. (Strong little personality right there!). But every now and again we would mention it to keep trying to plant the seed, though at a couple of points she got very teary because she was scared and nervous of something new. Completely understandable.

In the end we said we would just go and see Lynne, she could feel the bandages and the foam and if she didn’t want them on that was fine. This is not something we wanted to push on her as further down the line it may be something she really needs, so we didn’t want to risk a bad first experience. However, we did also throw in the idea of a hot chocolate and a new toy if she did allow Lynne to put them on – even just for a little while…which swayed things a little bit!

And, of course, she was an absolute star. As was Lynne. She showed Lucia the foam and the bandages, explained how she would put them on, let her have a good feel of everything and a bit of a play with them, assured her they wouldn’t hurt, nothing would stick to her skin and if she really didn’t like it then she would take it off right away.

Let’s do this!

Then she was ready to give it a go. She chatted and laughed as the process started and loved the little ‘pillows’ of foam that went between her toes to keep them comfy. As the layers went on she said it felt weird but ok and when Lynne got to her knee she said that was enough. Ideally we had hoped to do thigh high but for a first go to the knee was amazing. She kept saying it felt weird as Lynne was putting the foam and bandages on, but by the end she seemed comfortable and although still ‘weird’ she said it also felt ‘great’.

We decided to take it hour by hour and Lynne sent me home with special scissors in case she needed them cut off at home. The goal was to keep them on for 24 hours and take her back to Lynne in the morning so she could cut them off and see how her swelling had reacted.

Right now she is sound asleep in bed after a big day. These things always take quite a lot out of her and it’s easy to forget what is going on underneath the bandages. That it is squeezing her leg and foot tightly to move the lymph and that her body and organs are then having to cope with this extra fluid being pushed around her body. Exhausting.

Superstar

As always, she has completely amazed us in how she takes everything in her stride. Although she couldn’t wear a shoe over the bandaging she has still wandered around the house as normal and when we went out for family tea she happily walked around the restaurant too!

We are so so proud of how she has handled today and have our fingers crossed for a peaceful nights sleep. I’ll update at the weekend.

Last week saw the end of school for another year with Max finishing Primary 4 and Lucia completing her Primary 1 year. And what a year it has turned out to be. School reports came home and made us beam with pride at how kind and helpful they had been, how hard they had worked, their fantastic achievements and, most importantly, how much they had enjoyed the school year.

The school they attend is simply fantastic. Their teachers and classroom assistants have cared for them so much through the tough times (including broken bones/extra lymphoedema swelling/falls) as well as teaching them all that they needed to know throughout the year.

They went to school happily most days (sometimes after being asked to brush their teeth/put their coats on 20 times!) and have really grown in confidence, ability and knowledge since September. They both make us burst with pride on a daily basis at the incredible little people they are becoming. We simply could not ask for more and truly have the two best children in the world! (Disclaimer: slight bias).

This was Lucia’s second year at this school – she spent an amazing first year in the nursery department which she loved and gave us a first taste of someone else looking after her needs. However, this year was her first ‘proper’ school year and anyone who follows the blog will know how nervous we were at the start.

However, she has had an outstanding year which has seen her learn to read and write, do addition and subtraction, made close friendships, took part in physical education, outside play, attended a school trip and took part in sports day – just like all the others in her class.

Not only did she take part but she also brought home prizes! She was presented with the prestigious P1 Literacy Award at the school awards assembly and won the bronze medal in one of her running races on Sports Day. Watching her racing with a big smile on her face and crossing the finish line in third place was just amazing!

The talent show

She also came third in the school Talent Show when she performed a little ballet routine to lullaby music (made up by me!) in front of over 400 children and teachers – this makes my heart want to burst! Knowing she has this amazing confidence to want to get up there and perform – and then actually doing it – makes me fill up just thinking about it. And, most importantly, she loved every minute. On the morning of the show she said the ‘butterflies are flapping in my belly but I am mostly excited!’. The butterflies felt like they were whipping up a tornado in my tummy that morning too! But off she went, eager to get on stage and show her moves!

She came out of school on cloud 999 never mind cloud 9, beaming from ear to ear saying over and over, ‘I just can’t believe it!’. I think this may have been the happiest moment of her little life so far and to see her feeling truly ecstatic and so proud of herself was an incredibly special moment. And Max was almost as excited as Lucia! He watched her perform and came running out of school saying she was brilliant, remembered the whole routine (he knew every step too!) and his smile of pride for his little sister was almost as big as Lucia’s!

‘I can do anything I want’

Lucia has achieved all of this in spite of her lymphoedema. Although her condition plays on my mind pretty much all of the time it doesn’t feature as a ‘big thing’ in her little life – which is exactly what we have been aiming for. She will say at times, ‘I have lymphoedema but I can do anything I want’ – and guess what? She can and she does. And not once has she ever thought she can’t. And this makes us immensely proud and incredibly emotional. (I am aware I am completely overusing the word proud in this post!).

Reassurance

We are also so thankful that Lucia has a wonderful assistant at school who has been there everyday to ensure all her additional needs are met. She pulls up her compression garments every half an hour and ensures they, along with her toe caps, are worn appropriately and comfortably, helps her get her shoes on and off, assists her at toilet visits, watches her in the playground for any trips or falls and treats any cuts and scrapes with impeccable care. She also supervises her at steps and stairs as Lucia is still wary of these and can tend to trip, as well as keeping her legs comfortably elevated under her desk. She is the most caring person who treats Lucia with such kindness that enables us to feel reassured when she is at school.

What we have learned this year

We have also learned a lot this year about how Lucia’s condition can fluctuate. She does go through periods where her swelling can be worse and during the school year she had a particularly bad ‘flare up’. You can read about this here. When this happened we were able to put extra measures in place during school to try and help this extra fluid build up – that was to always have her legs elevated when she was sat at her desk.

We always knew Lucia tended to tire more quickly than her friends and we could definitely see this during the school year. So we have had to carefully manage her fatigue levels by making sure she has proper rest time and elevation after school, only took on one activity outside of school – one hour of ballet on a Saturday morning – and gave her plenty of time to rest at the weekends in time for Monday morning.

She definitely seemed to pick up every illness going – it was just one thing after another – and even when she had eventually got over each thing she still always seemed to have a lingering cough or sniffly nose. Even now, with school finished she is currently fighting a virus of some sort!

Summer has arrived

But the main thing this year was how much Lucia enjoyed her school year, how well she was looked after and everything she has learned. Having her big brother there looking out for her is also a lovely thing and he would always give her a little high five if they passed in the corridor! Now Summer is here and with weeks stretching out in front of us we can’t wait to have some holiday fun together as a family. Bring it on!

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a little bit about us

Hello and welcome to Little Miss Lucia’s Lymphoedema Life blog! Lucia is my beautiful daughter, born on 12/03/12 with all ten fingers and all ten toes. However, her 10 perfect toes were puffy, as were her feet and legs. After months of tests and hospital appointments she was finally diagnosed with Primary Lymphoedema. Read More